25 replies to this topic

[ammey]

Hi, my name is Ammey and my son Kaine is 11 yrs old diagnosed wih Narcolepsy over a year ago. He is on Provigil right now.

He already has an IEP at school because of an Autism Spetrum Disorder, and Sensory Modulation Disorder. We recenlty moved, so he is at a new school. When I had my first IEP meeting with them, they flat out rolled their eyes when I explained the Dr's orders to manage his Narcolepsy. Which is a second dose of meds before noon, and a scheduled nap, 15-60 minutes around mid day.

They refuse to comply with the nap, only allowing Kaine a few minutes to rest his head on his desk during class if he needs to. (How can he rest?) They claim the nurses office harbors germs, which they do not want him exposed to, so there is no place for him to lay down.

So, when he comes home, even in the car, he falls apart. He unravles quicker than a ball of yarn. He cannot tolerate anything, and frequently, even on the Provigil, he is sleeping instead of eating dinner or doing homework. They also made comments trying to discount his diagnosis because they have never seen him have a sleep attack, and feel his sleep attacks outside of school do not warrant a nap accomodation. Mind you, he fell asleep at school often, once for an entire school day, at his last school, before the Provigil!

I tried to tell them Narcolepsy does not always look like the stereotypical sleep attacks, but on better days or meds, it can just be chronic excessive sleepiness that affects attention, mood and memory. They seemed pretty set to hold onto their ignorance about Narcolepsy.

I am speaking with a Sp Ed advocate re: whether they can pick and choose which Drs orders to comply with, as they see fit. Medication is not all the treatment involved w/ Narcolepsy. My son has seen 3 pediatric sleep specialists who all ordered the same treatment regimen for him at school.

Do any of your children, in Middle School, or Elementary school have a nap accommodation, and is it truly necessary?

Any advice?

[Lovemyhusband]

Hi Ammey, Its nice to meet you. I find it rather disturbing that they will not accomidate your sons need for a nap. People are in and out of the school nurses office all day long without any concern of them getting sick because someone else is sick in that room.

Try getting them to allow him time in another room to rest. Like a counslers room or the school psychologist office. I am very pushy when it comes to my childs needs so I would not take no for an answer from them. Check out the ADA website and see what it says. Just because the don't know about N doesn't mean your child has to suffer.
Good Luck!!

[greatbig47]

:roll:

I can't stand the rolling of the eyes. Nothing is more offensive.

"Yeah, buddy...I make this stuff up. I'm just SAYING my child has narcolepsy to make your day just a little less pleasant" There are places for *ahem" morans *ahem* like that...It's ANYWHERE BUT AROUND ME.

Since they have rolled eyes, can you approach them with a very specific outlined plan? A plan that tells the school what to do and when... Perhaps they are just affraid that it has to interupt the flow of the cirriculum. Perhaps approaching them with a plan that clearly outlines how it doesn't have to be a stumbling block for their day.

Quite often we have no choice but to educate the ignorant about the condition. Sometimes we see people roll their eyes, and we gotta call em on it.

[ammey]

:evil: How I felt yesterday How I feel today

I don't mean to shock anyone, but things went completely different than I expected when I spoke to the Principal today. She did an about face, even recommending the health clinic as a place to rest. I suggested he use clorox wipes to clean around his nap area. We set a time during the school day where missing class would not affect him. He has a college reading level, so he will miss reading class, and when the entire school is quiet and reading, he can lay down and take a nap! OMG! How easy was that.

I think that someone spoke to thep principal before I did. I had spoken with the school nurse, her supervisor and the Special Ed. Coordinator this morning about my concerns about the order not being implemented, so I think someone let her know she has to comply with it.

I cannot wait to see the change in him after school. He has been so exhausted everyday that he cannot handle anything.

I am doing a happy dance as I collapse from releif this did not end up in court!

I am so happy to meet you all and look forward to talking to people who don't say Narcolepsy what?

[KFoster]

I am really glad to hear of that turn around because my next suggestion was going to be for you to not waste anymore time and to go ahead and find an attorney. I listened to the "rolling eyes" attitude for two years and I wished I had made a stronger and more fear instilling approach with issues regarding my son. Keep us up to date. By the way, I also thought that my son had sensory issues and may have been on the Autism Spectrum because he would fall asleep after being in crowds of people and is hyper sensitive to noisy crowded areas. Also, because he does a lot of kind of staring into space, and appears to kind of be in zone mode a lot, but then after he was diagnosed with Narc. it all seemed to make sense to me. I have been doing a lot of undiagnosing him now. Hope things go well for you.

[greatbig47]

:evil: How I felt yesterday How I feel today.

I am so happy to meet you all and look forward to talking to people who don't say Narcolepsy what?

Sometimes things fall inline. These are good times to be thankful. It might sound like a minor battle, when infact it's HUGE! Thanks, Ammey. Somewhere inside yourself, you had to believe the situation would get better!
bravo!!!!!

[Lovemyhusband]

I am so glad things worked out for your son. You will have to let us know how he feels when he comes home. I bet he even has a better attitude about school.

[ammey]

Thank you all for your encouragement. I hope to hear more of your own stories w/ Narcolepsy.

By the way, I also thought that my son had sensory issues and may have been on the Autism Spectrum because he would fall asleep after being in crowds of people and is hyper sensitive to noisy crowded areas. Also, because he does a lot of kind of staring into space, and appears to kind of be in zone mode a lot

KFoster, I know a very educated brain injury specialist who wrote about how sensory defensive behavior, like the noise sensitivity, tactile sensitivity, and attention, etc. is processed in the RAS of the brain, she wrote;

"It is easy to conceptualize that the sensory system provides the input that stimulates the Reticular Activation System of the brainstem to arousal. The RAS is responsible for the regulation of alertness, and coordination and regulation of focus (attention) and the efficient management of input and of output. The proper functioning of this system is essential to learning and to behavior management."

THEN, I read an article on Narolepsy that mentioned involvement of the RAS. It is physiologically very possible that they could go hand in hand.

Ammey

[sleepyavon]

I am really happy you're son's accomodations were granted. I am an adult, and I need several naps a day. If I had a child who onset with N as a child, I would be extremely aggressive. Congratulations, on your hard work and determination!

[Toph4er]

I'll put it this way, no one even thinks of messing with my mom . So congrats on the accommodations. Now are they gonna have someone wake him up after 20 minutes (after 20 you slip into a deeper sleep that then becomes less restful). I am also happy to hear that he reads at a college level , I was always that way, except now I have trouble reading block paragraphs, I get lost easily, be it falling asleep or getting overwhelmed, I don't know. I have to scan pages more that read along the lines or I get lost. It was hard at first but I have developed a pretty good scanning technique so I don't miss as much. The alternative is to have a highlighter or pencil in hand...which even then I don't feel is as good as scanning unless I know I will have to go back over the reading.

Chris"Toph4er"

[Libby]

Hi,
I'm very new to this my son is 15 and was just it was just discovered that he has Narcolepsy.
He has been failing at school and the teachers email me weekly to tell me he is falling asleep in class.
He went to a sleep lab this weekend and thats when they discovered it. I knew something was up so I took him to the Dr. and she tested for everything encluding diabities to anemia, but all the test came back clear. The Dr. then said it was time for a sleep lab.
Let me tell you, the mornings in this house are rough, I have to start 1 half hour before he needs to get up just to get him to get up. Then the begging starts about wanting to stay home because he's just to tired to go or to do his work. So I just encourage him that it will be ok and please just go and try to get through the day. I have an appointment this week for him to see a specialist for his medication, crossing fingers here that it helps school and the attitude and most of all his well being.
I'm sorry if I'm not the one you need to talk to but I sure need you, This whole thing hurts so bad and I need some support.Thank you for listening.

[Cryopathic]

Hey Libby why don't you get your son to join the Forums? I would be happy to talk to him. I can relate.

[Libby]

Thank you so much I will do that.

[MOE2626]

I HAVE A QUESTION, HOW DO U KNOW IF YOUR CHILD HAS NARCOLEPSY? I WAS FINALLY DIAGNOSED ( AFTER 26 YEARS OF HEARING EVERY EXCUSE!) NOW OUR 12 YR OLD DAUGHTER IS SHOWING 'SIGNS' SHE SLEEPS MUCH MORE THAN HER PEERS. NEEDS TO NAP IF SHE WAKES EARLY. SHE BARELY WILL DO SLEEP OVERS, CAUSE 'THEY STAY UP TOO LATE!' SHE HAS HAD EEG'S ( FOR FOCAL SEIZURES) BUT I AHTE THE THOUGHT OF HER GOING ON MEDS, AS I AM. MY NEXT THOUGHT IS THAT PROVIGIL CANNOT BE TAKEN DURING PREGNANCY. WHAT HAPPENS AS SHE GETS OLDER? AND, I HAVE INCREASED MY PROVIGIL TO 200MG A DAY AND CAN STILL FLL ASLEEP VERY EASILY. I PRAY SHE DOESN'T FOLLOW MY FOOTSTEPS, BUT IT IS APPEARING LIKE THAT. IS IT INHERITED??

I AM GOING TO LOVE GAINING KNOWLEDGE ON THIS DREADFUL ILLNESS!
MAUREEN/FROM MASS

[Some1whocares]

Hi,
I'm very new to this my son is 15 and was just it was just discovered that he has Narcolepsy.
He has been failing at school and the teachers email me weekly to tell me he is falling asleep in class.
He went to a sleep lab this weekend and thats when they discovered it. I knew something was up so I took him to the Dr. and she tested for everything encluding diabities to anemia, but all the test came back clear. The Dr. then said it was time for a sleep lab.
Let me tell you, the mornings in this house are rough, I have to start 1 half hour before he needs to get up just to get him to get up. Then the begging starts about wanting to stay home because he's just to tired to go or to do his work. So I just encourage him that it will be ok and please just go and try to get through the day. I have an appointment this week for him to see a specialist for his medication, crossing fingers here that it helps school and the attitude and most of all his well being.
I'm sorry if I'm not the one you need to talk to but I sure need you, This whole thing hurts so bad and I need some support.Thank you for listening.

[Julie A]

I HAVE A QUESTION, HOW DO U KNOW IF YOUR CHILD HAS NARCOLEPSY? I WAS FINALLY DIAGNOSED ( AFTER 26 YEARS OF HEARING EVERY EXCUSE!) NOW OUR 12 YR OLD DAUGHTER IS SHOWING 'SIGNS' SHE SLEEPS MUCH MORE THAN HER PEERS. NEEDS TO NAP IF SHE WAKES EARLY. SHE BARELY WILL DO SLEEP OVERS, CAUSE 'THEY STAY UP TOO LATE!' SHE HAS HAD EEG'S ( FOR FOCAL SEIZURES) BUT I AHTE THE THOUGHT OF HER GOING ON MEDS, AS I AM. MY NEXT THOUGHT IS THAT PROVIGIL CANNOT BE TAKEN DURING PREGNANCY. WHAT HAPPENS AS SHE GETS OLDER? AND, I HAVE INCREASED MY PROVIGIL TO 200MG A DAY AND CAN STILL FLL ASLEEP VERY EASILY. I PRAY SHE DOESN'T FOLLOW MY FOOTSTEPS, BUT IT IS APPEARING LIKE THAT. IS IT INHERITED??

I AM GOING TO LOVE GAINING KNOWLEDGE ON THIS DREADFUL ILLNESS!
MAUREEN/FROM MASS

They say that N is not genetic. At least extremely rare to be genetic. The material I read said it's only genetic in 2% of cases. When my 2nd grade daughter fainted in school I immediately worried it was a CAT attack as my first was in 1st grade. I brought it up to my doc and she said that even in identical twins you don't see both with N (whatever that is supposed to mean).
However, I have it, my father has it (although has never treated it), his brother has it and their father had it. In fact, my last name actually translates into "wake up" in another language. I figure it's been in our family for centuries, at least since surnames were chosen/assigned. My doc finds this amusing.
In regards to your child, the advice I was given was that putting my daughter through any testing or treatment is up to me, but in her opinion, if the issues are not affecting her life in general, to avoid it until it is necessary. I agreed. She also said that children have a tendancy to mimic their parents, even unconsciously. Now, this does not apply to me because the last CAT attack I had was when she was only a year old, but I guess it's something to think about for some Ns.
As for your concern with treatment and pregnancy, when and if it becaomes necessary, I know that there is an area on the forum specefically dealing with N and pregnancy. Check it out. I hope all of this helps.

[doscious12]

I'm really glad every thing is going well for u now.I would like to say that ur son goes through alot so be very sentimental towards him.I had N from 5th grade to age 27 without any medications and my school years was a big night mare.He should try sports because i could stay awake for that small time period but as soon as my games were over i was asleep.Good luck!

[Shonda]

Hello Everyone,

My name is Shonda and my 11 years old son was diagnose with Nacrolepsy about an year ago and it been very hard to deal with, we have tried so many different medications and he been kick out of school over six times this past school year, I took him to this doctor because of his anger issues she put him on Prozac,Abilfy, Tradazone, and Adderall they took him off the Provigil 200mg because it didn't work and I tell you when she but him on all this medication and I start receiving call every day, and suspend him every other week, so when school ended I took it upon myself to take him off of all the medication that they we prescribing, exept the Adderall he start doing real good but still was getting mad and a little moody and I took him to his doctor appointment on July 15th (meanwhile I didn't tell her that I took him off the medication she was still writing me prescrisptions out and I throw them away, She decide to tell me that the adderall cause mood swings, So she tried this new medication call Vyvanse 70 mg to keep him awake and focus he's doing real good no mood swings and he haven't been getting in trouble he do what I tell him, It's like I have my son back and playing sports help a lot.(all this started when I let the dentist put him to sleep they gave him to shots and it took about eight hours before he became fully awake.
And my son blames me for taking him to the Dentist, that's why he has nacrolepsy.

Any suggestions please let me know.

Thanks, Shonda

[greatbig47]

Hello Everyone,

Any suggestions please let me know.

Thanks, Shonda

So what have we learned here?
Drugs....(can be) bad!
Exercise...good!

I would suggest more of the same...MUCH more.
Martial Arts will work him like crazy while introducing a deeper understanding of what focus is. If not martial Arts, something that high in impact.

Shonda, you are a WONDERFUL Mom! You are asking questions and being pro-active! Big-ups to YOU!

Also consider going to the conference that's coming up in October.

-Stu

[momosleepyc]

Hi, I am new to this site. My 11 year old daughter was diagnosed with narcolepsy and cataplexy about 1 year ago. Her onset went from being perfectly normal to not being able to stay awake long enough to eat or even walk sometimes, in about 1 month. This is her first year of middle school, any advice would be great! thanks